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Cancer Care Coordination : An Australian Perspective Professor Patsy Yates Queensland University of Technology Chair, COSA Care Coordination Working Group Associate Professor Mei Krishnasamy Director, Cancer Experiences and Nursing Research Peter MacCallum Cancer Centre President, Cancer Nurses Society of Australia Presentation Overview • What problem are we trying to fix? • How has care coordination developed in Australia? • What has been achieved from the establishment of care coordinator positions in Australia? • What have we learned from the experience? The Australian imperative mirrors many of the issues identified in: – The stock-take document you have produced to inform your work – The Principles implementation document that have informed your reading for today – The MoH statements around the 2 key service objectives: • Improved experiences • Reduce inequity and deliver better outcomes A Need for Reform: Optimising Cancer Care in Australia Report 2003 • Many places where patient and families report becoming lost in the system • Many patients do not access adequate care • Increasing complexity of the cancer care system • Growing demand for cancer services • Health workforce reforms inevitable What problem are we trying to fix? • Negative patient experiences of the systems of care • Increasing complexity of care • The increasing demand for services • Inequity in access to and outcomes from care • The need for workforce reform What has been the response in Australia? • Care Coordinator positions developed as a solution to the problem • Emphasis placed on multidisciplinary team as a key to improved coordination • Both initiatives embedded in a system approach to improving coordination However each jurisdiction has developed its own model and approach to reform Before we start: Some underlying concepts and principles • To be effective care coordination requires action at a number of levels • There are a number of interventions that can achieve improved care coordination SO Establishing a position dedicated to improving care coordination is one potential strategy to achieve coordinated care Care coordination is everyone’s business How has the care coordinator role developed in Australia? Key Developments: 2006 COSA Workshop • To define the problem of care coordination • To provide some context for exploring a range of strategies for achieving care coordination at the system, organisational, team and individual level, including the role of care coordinators • To review evidence and experiences with care coordinators, from the perspective of consumers, care coordinators, health care teams and policy makers 2006 Care Coordination Workshop: Issues Identified • The consumers’ experience and engagement • The limited integration of primary care providers • The need to support all health professionals to contribute to care coordination • The specific support needs for health professionals appointed to dedicated care coordination roles • Need to integrate coordination roles within the team and broader system-level strategies – your recommendation re placement in DHBs 2006 Care Coordination Workshop: Principles Identified • Patient focus: Care coordination should – be patient, carer and family-centred; – be a key focus across the entire cancer journey**; – enable patient choice (to not receive care coordination)** – improve patient access to services in a timely way; – address equity of access; – improve care outcomes. 2006 Care Coordination Workshop: Principles Identified • Team focus: – Care coordination takes a multidisciplinary team approach – Is inclusive of medical and allied health professions in both tertiary and primary settings, – And includes management and administrative staff. 2006 Care Coordination Workshop: Principles Identified • Systematic approach: Care coordination should – be evidence-based; – be sustainable and supported; – take a system-based approach; – be capable of use across different platforms, including public and private systems, metropolitan and rural and remote geographical settings and various care settings; – be built on a robust evaluation framework. Key Developments: 2007 COSA Care Coordination Workshop • Purpose: – To define expected outcomes from care coordination – To discuss methods for evaluating the health and economic outcomes and benefits of care coordination 2007 COSA Care Coordination Workshop • Outcomes – A shared understanding of coordinated cancer care and the expected outcomes that it will achieve for patient, organisational and systems level perspectives – Discussion as to how the planned outcomes might be evaluated – An agreed action agenda Care Coordination Outcomes – Patient Level Outcome Detail Every patient is aware of their pathway of care Every patient, irrespective of demographics and health service delivery setting: • knows what will happen to him/her from the point at which symptoms are reported/detected • can identify a key point of contact at each stage in the journey • is provided with consistent information throughout their journey. As a result, patients will have increased confidence in the system. The time from diagnosis to treatment is appropriate The timing of treatment is efficient, appropriate and takes account of patient preferences. The patient experience is positive Every patient feels valued, in control and respected. Care Coordination Outcomes – Service Level Outcome Detail A clear pathway is defined for each patient, and information moves with the patient through the system Key elements in the pathway include: structured interdisciplinary communication an evidence-based approach. There is an effective multidisciplinary team • An effective multidisciplinary team is one in which team members have the necessary expertise for managing the patient’s cancer, and in which team roles are clearly defined and interactions are effective and of a high quality. • Team membership may vary according to the stage in the patient journey. • It was noted that membership of an effective team may lead to improved satisfaction for participating health professionals. Transfer points are well managed across networks and sectors The process for transfer of care at each stage of the patient journey is clear and well managed. Key elements include: knowledge by health professionals of relevant contacts at primary and tertiary levels provision of relevant information at the point of transfer clear definition of entry and exit points to the pathway. Outcomes – Funder Level Outcome Detail More patients are cared for by an effective multidisciplinary team Includes increases in referrals to multidisciplinary teams as well as increased numbers of effective multidisciplinary teams. Patients receive appropriate treatment Improvements in treatment will include: improvements in time to treatment in line with recognised benchmarks (taking account of patient preferences) reduced variation in treatment.* Knowledge of and access to services, especially primary care, is improved Variation and duplication of service provision is reduced* Key Developments: 2008 COSA Care Coordinator Survey • Purpose: – to elicit information around scope of practice, work experience, referral pathways and learning and support preferences for Cancer Care Coordinators – to obtain feedback on the appropriateness of specific outcome indicators identified in the 2007 COSA Workshop COSA Care Coordinator Survey • Population and Sample: – COSA Members who self identified as being in a dedicated care coordinator role • 116 valid respondents – 42% (n=49) from regional/rural settings – 58% (n=67) from metropolitan settings • Instrument: – Developed by COSA Care Coordinator Working Group • Procedure: – Email sent to all COSA members, with link to the web survey – Instructions inviting COSA members in dedicated care coordinator roles to participate in the survey Findings • People in care coordinator roles are: – most often experienced nurses (96%) – new to the role** (53% in the role for <2yrs) Links to the development of a NZ CC training program – with focus on change management and process mapping – Clinical experience and expertise – Communication skills – Supportive care needs screening • Significant variation exists in scope of practice for Cancer Care Coordinators. – Role incorporates direct clinical care, psychosocial support and administrative functions – On average, more time spent on activities relating to education and support of individual patients, and less time spent on activities that might reflect more systemic or team coordination activities Of note • A minority reported a formalised approach to orientation role (less than 37%) or ongoing clinical supervision (less than 34%). Key Developments: 2010 Meeting of Cancer Nurse Leaders regarding Outcomes • Being able to clearly demonstrate the contribution made by Cancer Care Coordinators is affected by many factors – Outcomes occur at various levels, e.g. patient, provider system and for short intermediate and long term – Cancer Care Coordinators may not influence all outcomes of patient care. The team factor may influence the outcome – Selection of measures depends on the context in which the cancer care coordinator is working and the nature of the intention. 2010 Meeting of Cancer Nurse Leaders on Outcomes • Recommendations: – Seek a standard measurement for the patient experience to provide administration and clinical feedback – Routine data can be collected from clinical encounters – Measurement at the provider and system level may be best handled at two yearly intervals – Try to bench mark against other similar centres. What has been achieved from the establishment of care coordinator positions in Australia? Evaluation Reports • Evaluation of the state-wide Cancer Care Coordination Service in Queensland (not yet available) • Evaluation of Cancer Nurse Coordinator Roles at Peter MacCallum Cancer Centre (available as web document) Evaluation Reports – Some Limits • Mostly retrospective designs • Samples are limited • Models vary making comparisons difficult Peter Mac: 2009 • The specific objectives of the evaluation included: – Clarifying the components of the NC role. – Describing the current NC roles through engagement with key stakeholders in nursing, medicine and allied health. – Describing patient and family experiences of NC involvement in their care. – Exploring the training and development needs of nurses performing the NC roles. – Making recommendations about the future development of nursing roles Key Findings • NCs are highly valued by MDT members, patients and families • The NCs roles are poorly articulated and defined • The title Nurse Coordinator implies a role characterised by pathway management rather than advanced nursing practice • The NCs exhibit several key indicators of clinical burnout including emotional exhaustion, feelings of inadequacy, chronic tiredness and a sense of lack of appreciation by the nursing executive. • NCs describe little or no succession planning or backfill framework • • The NCs engage with administrative and pathway allocation tasks that limit their ability to function as expert clinical nurses or engage in evidence-based practice development initiatives. The NCs have little control over their workload and limited capacity to prioritise their workloads • In the main, the NCs work reactively to support not only patients and family members but also the clinical service within which they sit • The NCs have no mechanism or resource by which to capture data to indicate their contribution to patient outcomes Key Recommendations • Organisational responsibility for actioning an evaluation framework needs to be agreed to include: – What are the optimal outcome measures? • Barriers must be placed around the role, for example, chasing up blood results for others as opposed to checking blood results to inform NC decisions about patient care. • An information brochure describing each individual role should be developed so that the NCs, as advanced nurses, can distribute them to new MDT staff and patients as necessary. o Review the outpatient area and identify key common concerns. For example, no available room for NCs or nurse led clinics to function in. o Conduct NC group planning session annually – meet/workshop how the role has functioned over the past year and refine/make goals for the next year • A formalised mentoring system should be established A national perspective on outcomes– WA, Victoria, NSW and Queensland Improved outcomes for patients and carers • reduced anxiety and distress • improved understanding of their disease and treatment Improvements at service level • clarifying pathways • identifying service gaps • coordination of appointments • better systems for travel and accommodation • improved communication between services Cancer Care Coordination Outcome Scorecard Patient experience √ Navigating the journey ? Reducing inequity X Achieving efficiencies ? Care Coordination Role Evaluation – Summary 1) Substantial variation in the implementation of the role and role functions 2) Multiple factors influence how the role is implemented: • Some services had undertaken mapping and needs assessment • Resources available in the facility – some roles evolved to fill service gaps • Skills and expertise of cancer care coordinator • Perception and understanding of the role by the cancer care coordinator, MDT and organisation Care Coordination Model – Evaluation Summary • Patients have contact with cancer care coordinators at different points: – Most commonly come into contact at commencement of/soon after commencement of chemotherapy/radiotherapy; – Many identified the importance of identifying patients early, and a perceived gap in support for patients in the diagnostic and surgical phase. The reasons for this were identified as being: – Difficulty identifying patient pathways; – Limited involvement with clinicians in surgical and diagnostic settings; – Limited resources. Model - Summary • Limited use of specific referral, discharge criteria or routine post treatment planning, with many cancer care coordinators indicating this is an area which needs more attention; • Some examples of screening and assessment tools, although use is not consistent and opinions as to the value they have varied; Governance - Summary • General agreement that standardised approach to development of CCC service was beneficial • Some concerns regarding need to allow local variation according to service context and population needs Recommendations - Role • State-wide framework for CCC roles be agreed • Functions focusing on systems improvement be developed • Mapping process to establish how roles interact with systems • Orientation and regular CPD program be established • Templates and standardised communication and promotion strategies to improve communication and awareness of role Recommendations – Models of Care • Develop clear pathways for entry into and discharge from cancer care coordination service • Develop models which facilitate early entry and appropriate discharge Recommendations - Outcomes • Minimum data set be agreed to record activity and outcomes using existing IT systems • Develop systematic process where outcomes data are used to drive service improvement Recommendations - Governance • Strengthen leadership role in determining standards, providing ongoing support and monitoring of cancer care coordination services • Develop strategies for improving communication between Cancer Leadership Teams, managers and CCCs • Support additional opportunities for professional networking amongst CCCs What is the Future for Cancer Care Coordination in Australia? • There is a role for a key worker • There will be increasing diversity in how these roles are operationalised • The multidisciplinary team’s role in care coordination will be further developed • There will be greater accountability and emphasis on efficiency and equity • There will more attention to coordination at diagnosis and following treatment • There will be a greater emphasis on empowerment What is the Future for Cancer Care Coordination in Australia? • Strong frameworks, principles, pathways and tools for CCC services need to be developed, taking a population approach • Functions focusing on systems improvement need to be further developed • Develop systematic process where outcomes data are used to drive service improvement